The latest edition of the ChiPPS (Children’s Project on Palliative/Hospice Services) E-Journal offers a collection of articles that explore selected issues related to perinatal and neonatal palliative/hospice care of children and their families. This journal is produced by the ChiPPS E-Journal Workgroup.
Some of the articles within Issue #49 of the E-Journal include:
Going through the Grits by Scott Newport in which the author meditates on sharpening a knife to remove its imperfections by going from the coarsest grit sandpaper to the finest. He reflects on the death of his son Evan and on the struggles of another father with a child with a life-threatening condition.
A Cradling Song by Ref. John Bell. When a colleague and his wife suffered the death of their daughter shortly after birth, the father reported that this loss “was compounded by the lack of any text which encapsulated their experience and feelings when it came to the funeral.” Rev. Bell composed the text of a poem that drew on this couple’s experience.
Liliana’s Story by Laura Wotta, Liliana’s mother. This is the first of three articles in which parents describe unexpected complications in pregnancy leading to challenges, losses, and a child’s death.
Caring for Families Experiencing Perinatal Loss by Melisa Reeves This is the first of two articles in which the authors present guidance for professionals in caring for families experiencing perinatal loss. In this case, after the stillbirth of the author’s second son at full term, she decided that her work would be “telling the stories of motherhood in all their forms and variations.”
Pearls from Parents by Sue Steen, RN, MS. THe author is an experienced perinatal nurse who asked bereaved parents to share “the things that they would like others to know about their journey and also the pearls of wisdom they learned along the way.”
Perinatal Palliative Care: Two Decades of Exponential Growth by Amy Kuebelbeck. With some 300 programs now in existence around the world, barriers and concerns remain, but the examples cited here indicate that “this model of care is reaching a critical mass.
Neonatal Pharmacokinetic Considerations by Melissa Hunt, Pharm.D. This article explains why pharmacokinetic considerations are challenging in neonates and offers detailed guidance for effective, patient-specific management of symptoms in neonates.
Perinatal Palliative Care/Hospice-Related Resources compiled by Ann Fitzsimons, BS, MBA. This helpful article comples lists of websites for parents, and separately, for care providers and professionals; toolkits; sample birth plans; a link to a perinatal photography resource; books for parents; books for siblings; and relevant DVDs.
Archived issues of the ChiPPS E-Journal can be found here.